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bjsherm01

New member
Joined
Nov 7, 2008
Messages
1
Reason
Loved one DX
Country
US
State
WI
City
Milwaukee
Hello Everyone -

I'm brand new to this forum but am hoping someone out there might be able to provide some help.

My Father, although not clinically diagnosed until about 3 months ago, has been living with ALS for just about 3 years. At this point, he's struggling to keep his neck up all day, has a pretty severe limp, has lost motor skills in his left hand and just about there for right.

All the while, he doesn't use a cane, walker, or wheelchair and it this point doesn't intend to, unless forced. My Father was a lineman in his younger days but moved to a Union rep and is now the business manager and AFL-CIO executive board member. As such, his job demands extremely long hours and even extremely late into the evening to finalize labor negotiations.

Being a proud person, a person who used to be extremely good with his hands, and the hardest working person I know - he's now faced with a reality that has prevented him to live normally and do the things he's always done in the past. I've sat down with him and my mother on several occassions to discuss what they've done to prepare for what is innevitable. Both of them have not done anything to cope with this situation. They haven't taken advantage of caregiver meetings, support groups, or literature to be more proactive.

I'm hoping someone might be willing to just talk over the phone. Perhaps someone who might be going what I'm going through. My mother and father aren't comfortable talking about ALS. I don't know if it's denial or what, but I want to be able to talk to someone. Explaining everything that goes on would take too much forum space so if there's anyone out there, I'd love to have a conversation. My email address is [email protected].

To those in this forum living with and fighting this terrible disease - God bless you, I pray for you often. And for those of you caring for your loved ones - you are truly angels.

Thank you,
Bryan
 

SuzyQ

Member
Joined
Sep 6, 2008
Messages
15
Reason
Lost a loved one
Country
UK
State
lancashire
City
preston
So sorry

Bryan,

I'm so glad you found this forum, you will receive so much help and advice. I do understand what you're going through as i lost my father to ALS almost 3 years ago and like you he was only diagnosed very late into the illness.

I write mainly to welcome you and as there were, as yet, no responses. This will either be due to the time of posting or that people are responding directly to your e-mail.

God Bless,

Sue.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Brian ... have you contacted the ALS Assoc.? My ALSA rep has talked with me in person three times and offered great insight and advice. I was really in complete denial about what this ALS thing was all about when I was diagnosed, and she was great. She's available to me by e-mail at all times. (I have bulbar onset, so can't talk on the phone.)

I urge you to contact them. They will help you with your parents and with the whole situation.

I hope you find some help soon. Please let us know what is happening with your dad and mom.
 
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